Wednesday, February 13, 2019

My Honor to Honor Him

A week ago I attended the funeral of a terrific lady who I considered extended family.  She was 90 years young and had what appeared to be a very long life of love and family.  There were stories of places she traveled, and experiences she shared with her loved ones.  The service was very nice.  The thought I had as I sat with her immediate family was how clearly they were paying respect and honoring her that day.  She was surrounded by flowers, family photos, and a few small items that were precious to her in life.  I thought my mom and dad 2.0 did an incredible job in the closing phases of her life.  It can't be an easy task to do justice to 90 years of living in one service, and they did it elegantly.

It made me think about my relationship to Tyler.  Obviously I love him as my son, but what I have discovered is that there is an extreme amount of importance to him being honored as a person.  In other words, there is an element where I understand my role in protecting his rights as a man.  It is left to many of us, but I especially feel responsible for being a steward to what is important to his wellness.

I also happened to be watching a documentary last night which showed caregivers making incredibly difficult decisions for their loved ones.  One gentlemen said:  "I promised to always be right".  It struck me how profoundly that statement summed up the feelings of a caregiver making life-and-death decisions.  There is the constant battle between giving in to emotions, and doing what is best based on facts and evidence.

I imagine that every caregiver is just like me...flawed.  I find it very easy to make my own mistakes and poor judgments no matter how hard I try to avoid normal pitfalls.  But I've always made that promise to Tyler, that I would always be right where it concerned him.  Have a always been right?  Not even close.

But lets define what "right" really means.  After all, the outcome of our decisions are sometimes never known.  Or the outcomes can look different over time.  More often, there is both right AND wrong in each side of our decisions.  So what is right?  Right is looking you loved ones in the eye and saying, "what would you want for yourself?".  Right also means being willing to gather all of the facts, weighing the emotions, and having faith.  

Don't worry that every decision is right, because that is not achievable.  Instead, strive to make your heart and mind right when making those decisions.  Be right with yourself, be right in your faith, and be right with your loved one.  Then walk bravely in your choices, and don't look back.

Be well and God bless.  Tom

Sunday, January 27, 2019

"I'm so sorry"

No...I haven't offended someone with something I have written (that I know of anyway).  It's part of a conversation that goes something like this:

Me - "My son is severely autistic"

Other Person - "I'm so sorry"

I understand the context which the person is typically saying this  They are usually saying that they are sorry that some children are born with debilitating conditions.  Or they are perhaps saying they are sorry for the extra stresses they imagine accompany raising a child with autism.  I take the statement as one of empathy and compassion.

It's that next statement that makes me wince...."it must be such a burden".  I try to take a deep breath and remember that the other party is not trying to be as insulting as that sounds.  But what I hear is:  HE must be such a burden.

The dictionary definition uses the words "load", "forced to carry", "oppressive", and "heavy" when explaining what a burden is.  And the feeling that the word carries is one of loathing and regret.  

I've encountered many emotions in my 27 years as Tyler's dad, but loathing and regret have never been included.  I see Tyler as a young man before all else.  Not an autistic young man, just a young man.  His autism may be pervasive but it does NOT define him.  It is what he has, but it is not who he is.  

I too am sorry.  I'm sorry that he won't ever have a wife, or children.  I'm sorry that he has anxieties and pains that we can't truly understand, much less alleviate.  But I have never, ever seen Tyler as a burden.  He is my son.  He is a charming and handsome young man.  He appreciates love and he gives love.  He deserves to live in dignity and respect.  Most importantly, despite his disabilities, he soldiers on...he attends his daily workshop, he attends and donates to his church, and he lives peacefully in his home.  He carries his own weight in this world and then some.  Of course he needs assistance, but he is not a burden.

So when someone wants to show sympathy to the overall circumstance, accept that for what it is intended to be.  But if the word "burden" comes across, I suggest you think twice before letting it go by.  It may be the perfect time to gently but firmly defend the dignity of your loved one.  If they are at all like my Tyler, they've earned it.

Be well and God bless.    Tom

Thursday, January 24, 2019

Peace at Last

With an ice cold Corona in my hand
I slide my toes beneath the sand
The sun eagerly welcomes me
And dances across the blue-green sea

I sink my chair at the waters edge
As though dangling at society's ledge
My ears filled with the ocean's song
That's been repeated many lifetimes long

A soulful peace before my eyes
Bright colors under cloudless skies
Nature's wonders on full display
As meant to happen every day

I close my eyes and see the past
Generations come and gone so fast
The children making castles tall
The ocean claims them one and all

Behind my chair is what I left behind
The pains and struggles of mankind
Politics, violence, and Gods of War
Too far gone to hope restore

That world for me has reached its end
I cannot turn that way again
I've left those evils in the past
And found my beach retreat at last

I've traded in what's gone so wrong
For a stack of books 'bout heroes gone
Some Buffett tunes to set the mood
With cheap cigars and cheaper food

Speak kindly if you say my name
Or not, won't matter just the same 
Here I'll be right by the shore
At last at peace for ever more

Saturday, January 19, 2019

The Rut We Know

Most of us can identify.  You don't have to have a special needs child or relative to relate.  The devil we know is better than the devil we don't.  The unknown is scary.  We don't walk in the dark because we can't see what is there,

Special needs caregiving is the very definition of this line of thinking,  The life balance is so delicate, so volatile, so dynamic, that to take any chance at all is unthinkable.

Yet nothing changes until something changes,  We can't wait around until a sign drops from the sky and smacks us in the face.  It just doesn't work that way.  We have been given the ability to think and to reason.  So it's our job to see the right thing and DO the right thing.

A few months ago I was miserable in my job,  It was so bad that I knew I wasn't doing the best that I could do.  But I was making the money needed to pay the bills, so I would just continue on.  Fortunately I got a call from another company who wanted to bring me on.  I had moments of apprehension telling me to not take a risk.  Too much on the line to take a chance.  There are mortgage payments, insurance, etc.

I took a leap of faith.  Just like when Tyler moved to his new home, I trusted what I knew was the sensible solution,  I decided that fear and complacency weren't a good reason to stand still.  I took a chance.  I stopped being a victim and I took control.

Today I like my job.  Tyler is adjusted to his home now of 3 years.  As hard as each move was to do, I've not looked back in any form of regret.

Please read this carefully....we get one life.  That's all.  We don't know when it will end.  Our special person gets one life as well, and they deserve the absolute best that life has to offer,  If something isn't working, it's time for a change.  One of the most profound statements I have heard is that the only thing worse than a bad situation for 100 days is allowing a bad situation for 101 days.

If you know it in your heart that things aren't right....change them,  Be unafraid.  Be fearless.  Have tremendous faith and trust in yourself that there is nothing to fear in the dark.  Any decision made out of love and from a sound heart will find the right way.

Be well and God Bless.    Tom

Wednesday, November 28, 2018

Christmas and Autism

Good Morning!

Christmas is on it's way which creates a bittersweet time for the special needs parent.  Its easy to concentrate on what we cannot do, or what our child cannot understand during the holidays.  We can tend to have this Rockefeller Painting imagery of what we want Christmas to be for our family.  Its this unintended setting of expectations that can lead to our disappointment.

For our family, Christmas was made more complicated by Tyler's worsening behavior during the winter months.  As I've discussed many times, Nov 1 - Feb 28 were always his "dark period".  Regardless of what we tried he was extremely agitated and edgy during this time of the year.  Christmas, with the added stimulation that he didn't really understand, seemed to just contribute to further behaviors and frustrations.  I recall it being so bad one year that I had to stay upstairs with him while everyone celebrated the holidays downstairs.  To this day Tyler often doesn't open his gifts for days or weeks after Christmas because he just doesn't WANT to.

I don't remember Rockefeller painting a Christmas scene that looked like that.

So what does Tyler need from Christmas?  What does he really want?  As with so many subjects, we have had to separate what WE see as ideal, versus what is ideal for him.  

  • He wants security in the arms of his family.  He wants to feel comforted in a world that is scary to him, especially when it is cold outside, lights are blinking, and there is a dang tree inside of the house!

  • He wants his trusted people around him.  He enjoys seeing loved ones, his church, and close friends who give him special gifts like smiles and hugs.  These are gifts he fully understands.

  • He wants warm food, warm clothes, and a warm bed.  
Stop and read those 3 points again.  When I wrote them, and read them again, I wondered who really understands the real gifts of the season and who doesn't!  The greatest gifts for him are warmth, peace, love, and security.  What a simple and profound statement.

With all of this in mind, we have scaled back what WE believe Christmas should be for him, and worked to make sure he was getting what he really wanted.  We don't shower him with material things or make him open a bunch of presents.  Instead, we get him perhaps one or two things that will ensure his security and comfort.  We make sure we, and his loved ones. see him around the holiday and tell him how very much we love him.  And most importantly, we ensure that he always has a life where he is cared for and respected.  

It's not a mystery when you really boil it down....its just providing the gift of security and love. 

Be well and God bless.    Tom